Thursday, January 31, 2013

Sometimes the most well intentioned things, aren't.

Sometimes we do things with the best intention in mind. We do what we feel is right for the time and situation. We study. We research. We ask. We think we have it all figured out.

Then we realize we don't.

If you've been following my page for the last couple of months you may see where this is going. The kiddo was diagnosed ADHD last summer. I had held of on doing it officially but decided that it was time so we could do something about it as it was affecting him at school. You can read about it here. The problem with Autism/ADHD is that it is EXTREMELY difficult to know what is the Autism and what is the ADHD. Extremely. Like, to the point of impossible and it's really just a guessing game.

Naturally, the doctor wanted to start him on a stimulant. This seemed to work at first but every couple of weeks it would seem to wear off and they'd up the dose. Eventually we got to a point where it couldn't continue. By the end of November his tic was so bad he couldn't speak, he was getting headaches, he was drawing incessantly (and crying over how he couldn't stop himself), and he stopped sleeping entirely for 2 weeks until he was pulled from that medicine. (It took that long because the doctor was consistently out of the office and the nurses were afraid to pull him off of it due to the nature of the drug. Ugh....)

They switched him to a non-stimulant. I won't go into detail but let's just say things got a lot worse and reached crisis levels. Every day wasn't all bad, just a lot of not so good stuff. My son was gone. He was saying and doing things that no parent ever wants to experience. His main complaint was that he didn't feel like himself. He was depressed. He was angry. He was irritable and uncooperative. The agency he gets services from was becoming increasingly concerned. We got in to a psychiatrist to take over management of his medications. We got approved for family based services.

Our first appointment with the psychiatrist was earlier this month. My first words? I HATE his medication, it made him WORSE. The recommended medication change was as I expected: Risperdal. It is very commonly subscribed to Autistics. But I had a very important question for the guy. The question is this: how do we know that his behaviors aren't a result of him being a high anxiety child? What if he's unfocused because he's busy worrying about his plush toys or if mommy will be home tonight? What if he's just appearing hyper because he is nervous and antsy over what may be happening later? What if his tantrums and meltdowns are solely because he is so worried about something that when he's prompted to do something it causes an abrupt stop in his thought train that he just can't cope and we don't know that is what is happening?

I wanted to STOP the GUESSING GAME!!!

He seriously just sat there and looked at me for a minute. Then he agreed with me. Then he suggested a much more conservative approach. We are trying a low dose anti-anxiety medication. 

It has been a little over 3 weeks since we quit his last ADHD medication. It has been 3 weeks since he started the anti-anxiety medication. While the new medication has not been around long enough to do anything significant yet it has been plenty long enough for the other stuff to get out of his system.

The results are amazing.

To put it simply, I have my kid back.

He's running. He's jumping. He's giggling. He's grinning. He's cracking jokes. He's the goofball we all know and have been missing all these months.

When asked how he feels.... He is saying HE IS HAPPY!

My intuition has been that we were missing the mark. It seems my intuition was right.

Monday, January 28, 2013

Funny, Unique, and Simply Outrageous Things my Kiddo Does

After reflecting on a discussion I had with my son recently I realized he does some pretty funny things on a daily basis. They are all things he doesn't think much of but to the average person, would probably make them pause. (Though hopefully they don't stare for long.) I plan to list some here and perhaps expand on it as time goes on and other things pop up.

1. He purrs. Yes you read that correctly. When he's really happy, he purrs. This is a recent thing but has happened enough for me to actually have to stop and take note.

2. He uses his toes to help him keep track when working on math problems. The first time I saw the toe pop up I could not stop laughing!

3. Gives a running commentary on everything he does, including games he plays.

4. Wears goggles in the bathtub. A surefire way to keep mommy from taking pictures no doubt... :)

5. Writes me a note, every single night, after he goes to bed. Usually it's signed with lots of hearts too.

6. Writes his name in all capital letters. He didn't used to, but once he got his email address (specifically designed for kiddos his age, closely monitored/restricted, and linked to my email) he started doing it. Not sure why...

7. Sneaks into my room in the middle of the night to snuggle with me. He does love him some Mommy snuggles. Who am I kidding? I also love me some kiddo snuggles!

8. Rests his chin on L-shaped fingers when he's thinking about something. Which is really just so cute!

9. Every time he sees a Mario WII game he insists we have to get and play with R (my ex of many years who helped raise him and is the only 'dad' he knows).

10. Likewise, every Scooby Doo game he sees we have to get to share with Grandpa because Scooby Doo is Grandpa's favorite!

11. Ever since he was an infant he would tuck one hand under my arm and rest it in my arm pit, under my shirt. I asked him about it the other day. He said it was a calming thing. Fair enough.

12. He is obsessed with Super Mario. There is Mario stuff all over my house. Not to mention the 27 plush toys. Everything he does, draws, or thinks about will have some link to Mario.

13. He goes everywhere with me. Everywhere. He gets really upset if he finds out I went somewhere without him. He's gotten better about it over the years. Which is good, cause he really doesn't need to go to the ob/gyn!

14. He watches TV on the couch with the cushions fashioned as a tent. However, this only happens at Grandma's house. I'm ok with this. :)

15. He's as obsessed with spinny chairs on wheels as I am. Not only do you have to ride it across the room, but you have to spin while you are doing it also!

16. Whenever I am doing a show you can guarantee that at least once he'll be there for a rehearsal. You can also bet that at least once he will go up on that stage and start giving directions. I have a director in the making folks!

17. When visiting Grandma and Grandpa he sneaks next door to Great Grammy's house, sneaks in, helps himself to an apple, then sneaks out.

18. Also while visiting G&G, he'll sneak down to Great Grammy's, ring her doorbell and hide. Her only clue is the giggles from his hiding place.

19. He sleeps with his head under his pillow. Every. Single. Night.

20. Fills things up with water and hides them in the freezer, balloons, water bottles, volcanoes...

21. He makes me breakfast: frozen cheerios, microwave toast, and orange juice.

22. He makes cheese pie. It is horrific. :) One slice of bread, 5 or so slices of American cheese, microwaved. Yeah. The smell stays with you for days....

There are so many more! But we'll keep the list short. :)

This kiddo sure warms his mommy's heart! <3

Thursday, January 24, 2013

Deafness, Autism, and Hope

I've never really considered myself disabled. Am I? Yes. To make it simple, I'm deaf in both ears. To make it technical, I have a moderate bi-lateral hearing loss. I've worn hearing aids in both ears since I was 3. But I'm not disabled in the sense most people associate it. After all, I can do anything anyone else can do. In fact, most people don't even notice due to how well I can speak. (I spent a couple years in speech therapy for that and man did it pay off!) I don't consider myself disabled because it doesn't stop me from doing anything. It doesn't hold me back. It used to. But not anymore.

Lately there has been a lot of discussion comparing visible and invisible disabilities. So by those terms, I have a visible one, my son has an invisible one.

Are we different? Not really. We see the world very differently than your average non-disabled person. We are prone to suffer the same prejudices that others harbor.  Heck, I've even been fired from a job because I was deaf. (Hopefully he will never experience that...)

We both have issues with sound and touch. This may sound funny to you, especially when you consider that I'm deaf. However, as with Autism, there are varying degrees and grades of deafness. Some deaf people can hear frequencies that others cannot. (Yes FREQUENCY! Low, high, middle, all levels!) It resembles a spectrum if you need to think of a parallel.

As an added bit to blow your  mind... My alarm clock (which sits on the average bed table) vibrates. I "hear" (aka feel) the vibration long before I actually hear the alarm. Crazy isn't it? I can feel vibrations a little better than your average Joe. Just please don't slam any doors around me. :)

I have my own coping devices, just as he has his. And yes, I can get just as overwhelmed. We both HATE crowds. Really for the same reason. He can't process all the information at once and neither can I. Unlike hearing people, I can't filter the sound I hear through my hearing aids. I can't distinguish one thing from another or even figure out which direction it's coming from. It's simply everything, coming in all at one time, at the same volume, regardless of what it is. It is then up to my brain to actually figure out the who, where, and what and make sense of this jumble that is flying into my ears. Sound familiar?

I can't hear the upper frequency. Women's voices are often lost to me, especially if she has a soft or higher pitched voice. It's the same frequency that can send my son flying to the floor crying out in despair. Naturally, it took a long time for me to make that connection. Hard to figure out what you can't hear, right?

My ability to hear definitely affects my day to day life as much as Autism affects his. We both have to cope with a world that doesn't care to accommodate for us. I miss A LOT trying to hear and understand what people are saying. Some people speak way to quietly. Some are on the wrong frequency. I can't understand heavy accents. God help me if someone is talking to me over the phone. I have to actually sit and attempt to process the information really fast and retain it so that maybe, just maybe I will remember it later all by the time they finish speaking. It's the same for my son, but for a different reason.

For the record, this is why my mom goes to EVERYTHING with me (exception well visits and Autism related services visits). She probably doesn't even know this is the reason. But it is. I fear I will miss some critical piece of information or not understand something that is said because I missed a word or three.

Some people do seek to understand how I hear. I do my best to explain. The thing most people don't think of is how other senses are heightened because of the loss of one. I'm VERY sensitive to touch for example. A simple touch or brush can hurt. Tickling is excruciating... When they seek to understand how I struggle to hear, even with the hearing aids I use the crowds example. Sometimes it makes sense, sometimes not. Depends on the ability of the asker to see a little abstractly.

When I think about how it was growing up for me and think about how he's growing up now I can't help but want things to be very different. Thirty years ago disabilities weren't regarded the way they are now. I was ostracized all through elementary school. I was "different." I was misunderstood. I was the kid you didn't acknowledge.  Middle school wasn't a whole lot better but it was there that I was able to form friendships that I still have to this day. It wasn't until I got into high school that I developed the mentality that this is who I am, it's made me who I am, and if you have an issue with it then that is your problem not mine. My whole world view changed. By the time I hit college was was a completely different person. Even now most people do not believe that I was a shy, quiet, hardly-spoke-a-word, hiding in a corner girl. I'm far too outspoken, opinionated, and outgoing to give a hint as to who I used to be.

I want my son's experience to be different.

I was terrified when my son entered Kindergarten. Would those peers be just as cruel? Would they be able to accept him? Would his quirks separate him and keep him from having friends?

I was surprised by the answers.

He was welcomed by his peers with open arms. In fact there were a couple of older kids who tucked my son up under their wing and helped and protected him.  I was thrilled.  I was awed.  I wanted to hug those kids till they cried "uncle!"

Thankfully this has remained the case for him. We did have to change schools after Kindergarten to another school in the district who could provide more support. He was met in that school the same way.  I often hear about how kids tolerate some of his more odd behaviors, his mood swings, and even when he tantrums. They understand that it's just how he is. They don't hold it against him. They remain friendly, social, and helpful.

This gives me hope that things really have changed over the years.  That our innocent NT children are, at least for a little while, unaffected by the biases and prejudices of their parents for long enough that they can see the truth and reality for what it is. And in the process, recognize and accept these kiddos for who they are and what they can do. I just hope this extends into adulthood...

We have one more year before he heads off to middle school for 6th grade (he's in 4th now). I can only hope that through the pains and attitudes that often accompany adolescence, that this trend continues. He will likely end up in a school back on our side of town, away from these kiddos who know him so well.

Maybe we've just been lucky so far, but...

I have hope.

Wednesday, January 23, 2013

Dear Country Fair Employee...

Dear Country Fair Employee,

Thank you for what you did tonight. You did not know that my son was Autistic. You didn't know that he often appears to overreact to what seems like simple situations. You didn't know what could possibly have fueled his screaming panic all over the store. All you knew was that this 10 year old boy was missing a glove.

What you also didn't know, was that the glove was really his mommy's and he was borrowing them for his hands because he has sensory issues and can't wear his own. You didn't know that he is very protective of mommy's things and that he couldn't possibly accept losing her glove.

When you saw his distress you didn't judge, you didn't roll your eyes, you didn't even flinch. You simply dropped what you were doing, walked over to him, and offered to help find his missing glove. You did your best to keep him calm while his mommy finished the checkout. You walked around the store with him asking him about the glove and assuring him you two would find it before long.

You even found the glove and were rewarded with his beaming happy face. If his face wasn't enough, then surely his "thank-yous" were. Without even knowing my son has Autism, you simply reacted to a boy in distress, and immediately wanted to help. You gave him patience and understanding. Something we are not often met with at times like this.

When we got home my son commented on how "that 'county fair' employee helped" him out. He was so thrilled and awed by your kindness.

Thank you for helping him. And thank you for making this mommy thankful for people like you.

(Editor's note: For those of you unfamiliar with what a Country Fair is, it is a gas station and convenience store located where we live. The store was small so I was able to see my son's every move. It not only made it easy to note my son's distress, but also to see the employee's reactions and how helpful he was.)

Monday, January 21, 2013

I Just Need a Lot of Love, Mom

The past couple of nights have held the same cycle for us. The kiddo gets sent to bed. He comes downstairs pretending to sleepwalk. He walks over, curls up in my lap, and pretends he's fast asleep.

If I try to move him he puts on a pretty convincing performance of being asleep and unaware.

Well, convincing if it wasn't for the grin on his face. Oh how he warms my heart!

Tonight it was different.

On his way up the stairs to go to bed he dropped his container holding a bunch of food shaped erasers. He started freaking out about it because he knew he was supposed to be upstairs and he was still in the hall scrambling to pick them up. He gets upset when things don't go according to plan because he knows it can lead to "unexpected" behavior (thanks to his bsc for that gem.... /sarcasm) which really only serves to upset him more. I hear him scrambling and ask him what's going on.

I'm met with panic, whining, and him making his usual freak out noises.

I ask him again what is going on, hoping he'll just say it (I can't see him because I'm still in the living room). Same response. So I get up and to go see. He hears me walking and starts freaking out more. I walk in, assess what's going on, I tell him it's ok and to simply finish picking them up and get his teeth brushed.

I leave the hallway, hoping he'll calm down once he realizes that he was not in trouble. I hear him go upstairs and think everything is ok.  Not so much...

He's back on the steps and freaking out again. So I go investigate. By the time I get to him he's in full freak out mode. He's running to me, then away from me. He's covering his face with his hands. He's on the verge of simply falling to a heap on the floor. He can't find one of them.

I ask if he checked under the dresser in the hall. He's so busy freaking out that he tells me he can't look. Very typical when he's upset. He literally loses control and even if you walk him through something, he's just frozen and can't figure out how to do it. He just falls apart with any further attempt. So I look. It's not anywhere I can see. I tell him just to run upstairs and check his room where he has the others and make sure he actually dropped it.

Insert another freak out. I tell him he may have to go without for tonight as he has to get to bed for school and I can find it tomorrow.

Wrong answer mom.

This sent him totally over the edge. This is usually how he would respond if it was a Mario plush toy. He was crying, freaking out, total negative self talk, and talking about how he couldn't do without it.


I have a feeling he never lost it since I can't find it anywhere. Next task? Get him back up to his room and see.

After practically carrying him upstairs, he goes running into his room and lands on his bed. His lamp isn't even on yet. This is a sure sign that all is not right. He's petrified of the dark... So I turn on his lamp, ask him where they are, and to check.

Wrong again mom...

He's now throwing himself around on the floor crying. Ok, so I will check. Lo and behold...

Yeah, he never lost it.

He immediately freezes again, panics, starts crying all over again, and repeatedly tells me he's sorry he didn't listen and check.  I keep telling him it's ok and he's just tired, he has it now, so let's go to sleep. I assure him that I love him and leave his room.

He comes down not too long later with a note and huge pout. I have him sit next to me and ask what is wrong. He's just crying. I read the note and it reads: Dear Mommy my haert (sic) is broken :( </3 :( :( from A. :( </3 </3

I give him a hug and tell him everything is ok and that I love him. He tells me he just needs some love.

Oh, this momma has lots of love to give! So we sit. Him snuggled into my side. I "give" him a piece of my "heart" (a total pantomime gesture he started long ago with me when he was sad and was missing pieces of his heart and would ask for pieces of mine to make his heart whole) to help his heart feel better.

He smiles. He feels better. He tells me he just needed a lot of love. I said, ok. Then he says: If I ever have too much love then I will always be happy.


We go back upstairs. I tuck him in again. He smiles all happy and snuggles into his blanket.

Half an hour later he is "sleepwalking" down to me and snuggles back in my lap.

I'd say all has returned to our normal.

As he lays sleeping and I sit pondering all of this I can't help but think: how true is what he said? "I just needed a lot of love." In that moment when he was upset, confused, frozen, etc, all he needed was a little bit of love for those dark skies open right back up again. And he knew it. His self awareness reappears again.

I admit, I met him with some frustration. He has school tomorrow, he's good at delays, heck I'm just tired after this long weekend... I stand corrected. He needed met with love.

Saturday, January 19, 2013

The Way-Too-Eventful Shower

This post is brought to you by 80 year old pipes in an 80 year old house, the number 4, and the letter F (shortly followed by U, C, and K).

There are many reasons why I don't like to take my shower during the day if the kiddo is home. If you have kids, then you can relate to at least part of this, if not all.

The first reason is that my son's memory isn't that great when it comes to one thing (and I swear it is the only thing): don't run water when mommy is in the shower! If you have an old house like I do, you can relate. Someone turns on cold water, you get blasted instantly with scalding hot water. Someone turns on hot water, it's like and instant deep freeze.

Another reason is the interruptions. I like my shower. It is truly the only quiet time I get in my day. I love it when I don't work because I can take the kiddo to school, put on a hat to walk him in, then come home and soak in my blissfully quiet shower.

Usually I don't have that many issues. Maybe an interruption, usually a cat meandering in, but it's pretty uneventful.

On this lovely Saturday morning this was not the case.

Before I even get in there is a knock at the door. The kiddo wanted to tell me the cats were outside the bathroom door. Oooookaaaay......

I get in. I hear: thud, thud, thud, thud, CRASH! I don't even want to know... Could be the cat being chased... Could be the kiddo running and then not being able to stop... There's no blood curling scream so I let it go.

Blinding pain! HOT WATER ALERT! He apparently flushed the toilet downstairs. Or it was a hot-flash. I'm going with the former considering my age.

I hear steps running full speed ahead up the stairs, down the hall, then back down. At this moment I am thankful the steps are carpeted and allow him to keep his footing at lightning pace.

Another crash.

Ascending steps... Knocking. He quickly said something that I could not quite make out. I think it was in kiddo-ese.

Cold-flash! Verification that at my age I am not just having hot or cold-flashes.

Some rattling, like things falling. Perhaps he's emptying the dishwasher? (I later discover this is the case and he knocked a bunch of things out of the cupboard. He empties, I fill).

Hot flash! This one was brief. He must be getting water for his 100th cup of hot chocolate today.

I get out.

Yes all of this happened in a span of about 20 minutes. No wonder I'm on a short trip to insanity!